Kaylee’s column

Having grown up with pulmonary hypertension, 21-year-old Kaylee Mynot knows a thing or two about life with a rare disease. In her latest column for Emphasis, she reflects on transitioning to adult PH care services, and offers her advice for young people about to embark on the change.

Transitioning to adult services was always something I was anxious about. I was so content at Great Ormond Street Hospital (GOSH) and was familiar with my surroundings and the nurses. I had been under their care since I was a baby, so I felt comfortable there. My transition started with my team telling my family and I about the adult specialist centres that would be best for me to go to. It was up to us to make the final decision on which one. We chose the Royal Brompton Hospital* as a couple of my PH friends went there and my parents were familiar with it. The next step in transitioning for me, was that I had to get a whole new set of up-to-date tests done to send off to the Brompton. This included an ECG (echocardiogram) an MRI (magnetic resonance imaging scan) and blood tests. All of this went fine, and I was used to having all these tests, so I didn’t mind them! After this the team from the Brompton came to GOSH to meet me, and my mum and dad, to get to know me and my condition better. I liked that they were

able to do this for me as meeting them first made the transition a lot smoother. I was so nervous to leave GOSH. New places always make me feel anxious anyway but meeting a whole new team of doctors as well made it just a little more nerve-wracking! However, on my first appointment at the Brompton the team made sure I was comfortable, and all my doctors were so nice. My nurse sat with me to discuss any worries that I had, and it made me feel a lot better. Transitioning to adult services wasn’t the easiest thing for me. I’m 21 and still miss GOSH! But honestly, it’s nothing to worry about. The doctors and nurses are there to help you. If you have any concerns always talk to them or get a parent or family member to help you express your worries. My mum still comes with me to all the appointments and also talks to the doctor for me, as this makes me feel less worried. Do what makes you feel comfortable! Making the transition

*You will receive full support and excellent care from whichever adult specialist treatment centre you transition to.

Kaylee is happy to chat to any young person who may be nervous about moving up to adult care services. Please email media@phauk.org and we will pass your message on.